Well, I guess like everyone else, I never dreamed I would be in a Parkinson's Chat Room.
I was diagnosed in May 2006. I am taking Carbadopa/Leva, 5 tablets a day. I really hated to have to take so much just starting out but anything less did not control my symptoms (shaking, walking difficulty, off balance and unable to think well). I'm wondering if anyone else takes (or took in the beginning) this much med? My neurologist says that 6 a day is the limit with this med.
Also, I am experiencing eye problems (dialation of my eyes usually in the evening with really blurred vision). The neurologist and opthomologist agree that it a side effect of the Carbadopa/Leva. Anyone else experience this? Also, I have heard that there are eye problems occasionally associated with PD but have not heard what they are. Anyone know about that?
I am exercising 45+ minutes daily in the pool and hope this will help in keeping the muscles in as good shape as possible. Our pool is not heated though but can travel into town to therapy center when the weather gets cooler.
Interesting note: While watching the movie, "Saving Millie", my husband asked me if Millie reminded me of anyone and yes, she did. He and I both thought she and I had similar personalities. I asked my neurologist if there was a "Parkinson Personality". I was surprised when he said that there was. He said they are usually "detail oriented" people and he enjoys treating PD patients because they will read and find information on their own and follow drs instructions well. He also mentioned that on certain meds Parkinson people can become obsessive/compulsive. Thought this interesting.
Like most others, I suppose, I originally had a hard time accepting that I had PD but think I have accepted it pretty well now and know that I am not in this alone, I have wonderful family support and, most importantly, I cannot go to a place where my God is not already there waiting on me. That is such a comfort.
Connie, I was diagnosed in January of this year. Dr. started me out with Stalevo 4 tabs per day. Didn't control symptoms, so we added Sinement 4 tabs per day. That worked, but I too had eye dilation. I worked to get that under control and dropped back to 3 tabs per day. With the two drugs in combo and the three doses a day my symptoms stay fairly well under control and no eye problems. I too expereince not being able to think well. In my house we call it "Park Fog"! LOL!! It is like I know what I want to say but I am often unable to spit it out.
On the interesting note: I tend to be very detail oriented and certainly hope that my meds don't make me obsessive/compulsive.
I wish you and all of us suffering with the PD Shake well!
Thank you for responding, JBPhotonut. It is good to hear from someone who has had the eye dilation also. It was frightening until I found out what was causing it. If I continue with the blurred vision I might see if I could cut back on Carbodopa (Sinement generic) and add something else. From your ID I assume you are into photography also . . . my hobby. I used to have a dark room of sorts (converted closet) but went to digital probably 3 years ago.
I'm also wondering if anyone has tried the treatments available for PD voice problems. I am certainly considering it. I taught a Bible class to the lady inmates at our local jail for 6 years but my voice became so bad (soft, hoarse, scratchy) that it was difficult for the ladies to hear me. Retired from the jail about a year ago, not knowing what my problem was . . . now I know. If anyone has gone through this treatment I would appreciate hearing from you and whether you considered it beneficial.
Connie ~ Yes, I am a photography nut. Don't do as much of it since I no longer work in a photography store. Cost is a problem, plus I have not been able to locate a quality processor since moving. I shoot color and setting up a home dark room would, again be costly. I am fighting digital all the way. I love the convience of it, but I guess I'm a purist at heart. LOL!
I hope that you get some response on your voice question. I sing on our Church Praise Team, and at times my voice is affected. My husband says I whisper as it is ~ I say he just doesn't always listen. LOL!
I wish you luck and hopefully you will be able to find a happy medium on the meds so that you can manage the symptoms without the dialated eyes. I know what you mean about it being scary the first time it happens ~ freaked me out!!
Connie, By all means see a speech theripist, preferably one who specializes in PD. I have been dealing with PD for about 8 years, one of my scarist symptoms was problems with my speech. I could not even participate in a simple conversation To make a long story short, I took the coarse, did the homework and now I can speak and be understood. I still have speech problems, esp. when I am tired, but when a problem occurs, I know what to do. Good luck, Dave
I was going through some of the older postings trying to catch up on what is going on in this community. I can't seem to sleep so what else is there to do?
Anyhow, I see where you are having trouble with your voice. Try the Lee Silverman Voice Treatment. http://www.lsvt.org/main_site.htm
I know several people who have used this system with great success.